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  • Writer's pictureJessica Crawford

21 - 1.5 Years Later - How life has changed

I'm bloody doing it, I'm typing. I wasn't sure if I would blog again but here I am, moving my little fingers and hitting those big alphabet keys. I wonder what I'm going to say? I haven't planned a blog, I'm not sure I even have anything to say but that's the power of blogging, I surprise myself with words.


My last blog was posted over a year ago and it was only a couple of weeks after Mum died. I had to re-read it, I couldn't remember what I said or even how I was feeling. How strange is that? This paragraph stood out to me:


As you can imagine, things have been difficult since then and I have experienced many emotions. I will write a blog about this because my reaction has been nothing like I imagined. I thought I was prepared, I thought I had already grieved enough given I lost mum way before she died. I was wrong. I will also explain the deterioration and symptoms we saw in mum before the very end. I was definitely curious before I knew, and I assume others in this situation will be, too.

You know, I think this is why I haven't posted. I don't want to blog about my grief, explain the deterioration, or think back to those incomprehensible symptoms. I'm a different person now with a different mindset and I don't want to be back in that headspace. Is that odd? Does it mean I still have healing to do and I'm afraid to look back? Or does it mean I'm healed enough and understand that no good comes from looking back? I really don't know.


Another strange thing is that I'm not sure I know how to look back. I've had to scroll through my camera roll to give me some indication of how I felt. These pictures were taken on 30th May 2022, 21 days before she died. I had a call to say she was shutting down and that I should come and say goodbye. Whatever possessed me to take pictures of a dying woman and her crying daughter? I think I was holding on, trying to cherish every last moment and capture everything I could.




She didn't die though, and a few days later I did the very natural thing (cough) of jetting off to Portugal and Ibiza. Look how much fun we had:



WHAT THE F*CK. I forgot this happened and felt a lot of shame when I saw the pictures. It feels hypocritical knowing I'm about to speak of pain but sharing simultaneous happy memories. I remember questioning whether I should go on this trip, Mum was receiving end-of-life care and there was a very high chance she would die when I was away. I convinced myself:


  • It's too hard to predict the date

  • We've had so many scares lately, I actually think she's going to live forever

  • She wouldn't want me to miss out

  • She won't know I'm there anyway (ouch - that hurt to write)

  • Maybe the distraction is what I need


At the time, it felt like the right decision and I suppose it was, given she survived the trip. In between checking messages and regular calls home, I even managed to have a good time. I am finding it so difficult to justify though, but that's because I know how special her last day was. I can't comprehend not being there and knowing what I know now, I wouldn't have taken the risk.


In Blog 14, I spoke about Mum's symptoms but to my surprise, the post dates back to November 2020. There were another 20 months of deterioration but not a great deal of change. Here's a snapshot of Mum in the last 6 months:


  • Speech: No change since November 2020, still completely mute.

  • Communication: All communication stopped, she even stopped drawing pictures of ice cream cones which was her signature piece (again, blog 14 if that doesn't make sense!).

  • Mobility: Completely immobile and could only get around in a wheelchair. Getting in/out of the chair was still difficult but she was heavily supported by family and carers.

  • Mental capacity: Full deterioration and unable to respond to... anything really.

  • Food/Drink Consumption: Very volatile. She would eat (only if food was placed in front of her) but sometimes went days at a time without food or drink. Before she died, it was 10 days without food. I didn't know that was possible! Another thing - when she was eating, how did she know to put food in her mouth? HOW?


Disclaimer - Everything you've read above was written on 18th October 2023. At this point, I went into a weird funk and questioned why anyone would want to read a depressing blog about a dead woman. Since then I've received a few messages from lovely readers and it reminded me why I started this and why people are interested. Anyway, it's 4th January 2024 now, let's continue!


The day she died is one I will never forget, for both heartbreaking and heartwarming reasons. The biggest shock was when I arrived at the care home after receiving 'the call'. She was lying flat in her bed and I thought she had already died when I entered the room. I ran straight back out, unable to process what I saw. Her mouth was open, eyes sunken, skin pale, and body completely still. Pete (Mum's husband) reassured me she was still breathing so I made my way back and eventually, I got over the shock. Other family came to visit and all of us had some time alone to say our goodbyes. Finally, it was just me, Pete, and my 2 brothers, all sitting next to her bedside. I told Mum I would hold her hand and she could go whenever she was ready. We listened to her favourite music and I did exactly that, held her hand until she took her last breath. I have so much comfort from those last few moments, the thought of not having them makes me feel sick. I feel truly blessed this happened after I returned from Ibiza.


Anyway, back to another surprising turn. She died on 20th June and 3 days later, I did the very natural thing (cough) of taking a girls trip to Seville. Again, look how much fun we had:



Truth is, Seville was therapy for me. If you've read blog 12, you'll know I was in Vegas on another girls trip when Mum received her FTD diagnosis. I'm not sure which news was worse, but I do know that being surrounded by these incredible women on both occasions made it bearable. If you're going through or have been through something similar, I hope you've had friends like this to support you. I actually think they might be magic, you know.


Anyway, my camera roll throughout June is just one big rollercoaster. The good old cliché of 'everyone handles shit in different ways' is true. In those 4 weeks I:


  • Went on 2 holidays

  • Lost my mum

  • Cried approx. 7 litres of tears

  • Sold some clothes on Vinted

  • Attended a very fun party

  • Had a Britney moment and cut in a full fringe


Who cares, though? I got through it my way and there are no rules when it comes to grieving, which I certainly did. In between the distractions, I felt nothing but sadness which took me by surprise. I wanted this, it needed to happen, why was I so sad? I even felt disappointed in myself for feeling so down. I heard so many times 'you grieve twice' but I convinced myself death could not, and would not, be any worse than watching my mum slowly deteriorate. Turns out I did grieve twice.


Looking back, the sadness, guilt, tears, anger etc remained strong until the funeral was over (clearly the second type of grief was shorter-lived for me). Of course, I thought and still think of Mum often, but I understand now the end was the beginning of my healing journey. It's been an actual journey, too, figuring out who I am without Mum (and caring responsibilities). I've realised I am so many people - the woman on the IVF journey, the shareholder/director of a successful firm, the woman learning to play piano, the woman who likes to travel, the wife, the step-mum, the woman trying to find a cure for FTD but most importantly, the woman who isn't defined by FTD. Christ, what an ending.


Don't get me wrong, there's more I could write about:


  • My embryos that are currently sat in the freezer (AKA PGD)

  • Financial and welfare LPA's

  • The trauma around placing Mum in a care home

  • Bruce Willis

  • My brother also testing positive for the C9ORF72 genetic mutation

  • My work with GENFI and UCL etc


The real question is, do I want to? Writing this blog made me realise I'm on a positive trajectory, looking back does me no good. On the other hand, I know these blogs can support others which is something I'm passionate about. What a pickle. For now, I'll leave it open. Who knows, I might feel up to it again in another 15 months!

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10 Comments


Julie
Julie
Jan 18

I watched an inspirational young man Jordan very much like you Jess. He is raising awareness about FTD his mum had FTD he and his siblings have had genetic testing. He has inherited the faulty gene and so has his brother. His Sister didn't. He is determined to raise awareness and money for Alzeimers research. It is definitely the Bruce Willis affect but the more people know about FTD the better. He was on Good Morning Britain today around 0830am if watching on catch

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Julie
Julie
Jan 07

Thanks for the update Jess I am still on this journey with my 75yr old mum and found comfort in your blogs. Unless you are in the same situation no one will really know what an utter nightmare it is. My mum was 71 when she was first diagnosed she is now now been in a Nursing Home since November 2021. She has been totally mute for over 2yrs and her comprehension has gone. She is immobile and needs hoist transfers. She is on a pureed diet as at risk of choking. She no longer recognises us. It is heartbreaking 💔 Luckily she is in a good home so that reassures me and my sister she is being looked af…

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Lynn Cross
Lynn Cross
Jan 06

Thank you Jess! My husband Mark (58) is in end stage ftd. I have so many questions! How long is end stage? How long is a piece of string? I wish I had a crystal ball. The grieving process for me started 5 nearly 6 years ago when Mark was first diagnosed. Reading your blogs certainly helps me. Lots of Love from New Zealand. Lynn xx

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vicky.bishop
Jan 05

Please know how much your blogs help others who are going through a similar journey Jess ♥️ Thank you for sharing and giving us an update despite how hard it must be to think back to that time. My mum was diagnosed with FTD age 66 in 2018 and when I came across your blogs in 2020 they really helped me feel less alone so thank you. Sending you lots of love xx

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kellymolkenthin
Jan 05

This is the update I didn’t know I needed. Thank you so much for being able to post it.

My stepdad has FTD, diagnosed in 2020 and now he’s a shadow of himself. Surprisingly though he had quite a lucid day on Christmas Day, he spoke to our dog and one of his grandsons, and even spoke to my Mum in the car on the way home.

I hate how it completely destroyed all my mums hopes and dreams of a happy retirement together, she is his full time carer.

I’m so thankful for your blogs, take care xx Kelly xx

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Jessica Crawford
Jessica Crawford
Jan 05
Replying to

Hi Kelly. I’m so sorry you’re right in the thick of it. It really is so difficult and I often used to say FTD has ‘completely destroyed’ our family so I can relate. Sending you love, if you or your mum ever want to chat, reach out! I’m pleased my blog found you xx

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